Alara with her mother Haylei (middle), sister Mackenzie and Haylei’s partner Justin. Photo: Haylei Taylor.
A Goulburn family are facing the unimaginable with their young daughter’s diagnosis of a rare form of life-shortening childhood dementia called Batten disease.
Alara Kelly, now aged 6, was diagnosed in May 2024. Her specific variant, CLN6, is one of only two cases in Australia and around 120 worldwide. The rarity of the disease has left her mother Haylei, her partner Justin, Alara’s sister Mackenzie and Alara’s father Darcy battling the effects blindly, with little known about the speed of the disease’s progression.
“It’s all very fresh; she got her official diagnosis in May last year. A year ago she was running around, eating normally and was just your average kid. Her progression has been very quick,” Haylei says.
A year on from that initial diagnosis, Haylei takes joy in the small things, as their approach to managing the untreatable disease has forced them to take things as they come.
“Alara is a happy girl, it doesn’t matter what’s going on. She doesn’t understand her diagnosis. She loves music, she loves bubbles, she loves watching Bluey and Peppa Pig, she loves being outside, and she loves the water.”
Alara’s father Darcy speaks on behalf of himself and Alara’s brother Jamie when he talks of his happy little girl that he calls his superhero.
“She’s my hero; no matter what’s happening, she has a smile on her face; she’s a happy kid. My whole focus is supporting her.”
To help manage the costs associated with medical bills and adapting to Alara’s fast-changing condition, the family are preparing for a fundraising ball which has seen widespread support from businesses within the region and further afield.
Alara’s Batten Ball was initially dreamed up by Haylei and her sister to fundraise for a car that could be adapted to accommodate Alara’s wheelchair, but plans pivoted after an unexpected call.
“We had originally contacted the Newcastle Knights hoping for a signed Knights jersey, and I got a call from the wife of Knights player Adam MacDougall. The MacDougall Foundation, along with the Sleapy’s Foundation, wanted to just buy the car for us. It was a real shock, I wasn’t expecting that at all,” Haylei says.
With the donated Kia Carnival currently undergoing its modifications, funds raised from Alara’s Batten Ball, which has sold out of all 350 tickets, will now go towards Alara’s quality of life, and raffle tickets are still available for the multitude of prizes donated by businesses in the region.
“The goal is to purchase anything the NDIS won’t fund or are not quick enough to fund. It’s all about Alara’s quality of life; it’s quite limited now. We may be able to go on a family holiday to make that time special and make it fun for her.”
A part of Haylei’s mission since Alara’s diagnosis has been to raise awareness of the condition in an aim to increase funding for research to help future children who are diagnosed with Batten disease.
“We did a beach-to-beach walk last year to raise funds for Batten disease. City to Surf also includes Batten disease in their charities; it’s largely unknown and people don’t donate to things if they don’t know what they are.”
With more research, Haylei also hopes to prevent other parents from going through what they’ve been through.
“It’s so rare that our geneticist told us to go and Google it. She didn’t know much about it. She had only had one patient in her 30-year career with it.
“The geneticist told us there really isn’t enough research on it, and there really isn’t. We spent the next few days reading, and we read everything out there on it because there wasn’t much.”
Alara’s Batten Ball will take place on Saturday 23 August, at Veolia Arena in Goulburn. Tickets are sold out for the ball, but Haylei is encouraging people to still support the case in a variety of ways.
To support Alara’s cause you can head to her GoFundMe.
To donate directly to Batten disease research head to Batten Disease Support and Research Association Australia.
To purchase raffle tickets for the prizes donated to the ball head into local Goulburn businesses:
Cut and Curl Hairdressers – Civic Plaza Clifford St, Goulburn
Hairdressing Academy – 127 Auburn Street, Goulburn
For further events also raising funds for Alara:
Goulburn Bulldogs Ladies Day – 2 August, Goulburn Workers Arena from 9:30 am.
Variety Bash, 3 August.
Cash donations for the cause can be made at:
Red Rooster Goulburn – Corner Ducks Lane and Hume St, Goulburn
